Update after second recurrence, tumor surgery and colon resection

Sara Zipora

Second debulking surgery 14 months after first diagnostic one. Adenocarcinoma clear undifferentiated Stage IV b grade III. Good news is new tumor 8 cm size of grapefruit was same cancer as before. Not a new type. One yucky surgery week ,recovery ok. Tumor was wrapped around colon, no infiltration. I diagnosed it's recurrence by same feelings of constipation,finagled CT a few days later,Docs surprised I had no symptoms, Ca 125 -8 and blood tests all normal. Go know!
Most docs I consulted wanted to shrink tumor with chemo then operate. I couldn't stand idea of unwanted 'guest' living in me and the chemo weakening me prior to surgery. My Onco Gyno surgeon from Mt. Siani, Dr Peter Dottino was prepared to get it and do colon resection,cut colon where tumor was touching it and reconnect ends now untouched. Flew back home this week,four weeks post surgery, and began chemo, Gemzar Carbo today, Gemzar again in eight days then two weeks off and Gemzar carbo on third week.
Trying to 'channel' Linda's pep talk and researcher skills to light my path.
Wishing all well and success,
Sara

Tresia23

Hi Sara
I read your news about recurrence and was impressed with how you worked it out for yourself. I guess we are more tuned to our bodies. How are you feeling? You have been through quite a bit recently. How is the chemo going for you? Hope you will be feeling ok over Christmas, Take care of yourself,
Georgia

HellieC

Sounds like you're doing really well
So many ladies "know" their bodies and can tell the medics that something is wrong well before it shows on scans or bloods. Well done for speaking out and following up until you got somewhere! It sounds as if you are recovering well from the surgery. You were so lucky to get the colon resected - my second recurrence was similar but they were unable to reconnect, so I have a colostomy (potentially reversible in the future, but definitely here for the now, as it would be crazy to try a "take down" until I am clear of recurrence). It's not the end of the world, but I would have rather have had your outcome!
Please take it easy and allow your body to heal. I hope you have plenty of help over the holiday period and don't get tempted to do too much.
With kindest wishes
Helen

daisy366

HellieC said:

Sounds like you're doing really well
So many ladies "know" their bodies and can tell the medics that something is wrong well before it shows on scans or bloods. Well done for speaking out and following up until you got somewhere! It sounds as if you are recovering well from the surgery. You were so lucky to get the colon resected - my second recurrence was similar but they were unable to reconnect, so I have a colostomy (potentially reversible in the future, but definitely here for the now, as it would be crazy to try a "take down" until I am clear of recurrence). It's not the end of the world, but I would have rather have had your outcome!
Please take it easy and allow your body to heal. I hope you have plenty of help over the holiday period and don't get tempted to do too much.
With kindest wishes
Helen

Sara
OMG - a grapefruit!

My doc told me I'd be the best indicator of recurrence and your story shows this. But, tell me, did you have any scans that showed this tumor? Do you think it was super fast growing like optimist's. And with the CA125 staying low, one would never know something wrong. Good for you that you got surgery and are healing well. I agree with your logic. Another wonderful advocate, Sara.

About 2 years ago, I researched other biomarkers that you might check out and discuss with your docs - HE4 which I get routinely, and HK6 which wasn't available as test 2 years ago - it may be now. Maybe there is some other test that can be used instead of the CA125 for you and others that this is not a reliable marker for.

Continued best wishes to you, Sara. Mary Ann

snowbird_11

So glad you were able to get
So glad you were able to get the surgery and that you are now home and ready for chemo. you reinforce the importance of being aware of the signs for concern and pushing for needed tests. How will chemo work with debulking complete and no cancer marker to follow? Will it be a preset number of cycles? Hope you tolerate this go round well!
Annie

Double Whammy

snowbird_11 said:

So glad you were able to get
So glad you were able to get the surgery and that you are now home and ready for chemo. you reinforce the importance of being aware of the signs for concern and pushing for needed tests. How will chemo work with debulking complete and no cancer marker to follow? Will it be a preset number of cycles? Hope you tolerate this go round well!
Annie

Your update
Wow. You sure have been through the wringer! You certainly know your own body and how to "hear" it. Sending my best to you as you continue your treatments.

Suzanne

Sara Zipora

Thank you all for support
Still sleeping a lot from Gemzar carbo Thursday. Quite nauseous and no appetite. Going in for checkup tomorrow. They'll see my bloods and fluid level, I think. Will check out other markers thanks. Can't imagine how I'll fare Thursday for next carbo. Oops about overdoing holiday, planning regular annual Chanukah party about sixty , but sisters and kids will help.
Sara